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 My father is newly diagnosed 
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post My father is newly diagnosed
Hi everyone,

In December my sister and I got a call that my father fell and was hospitalized. The hospital would not release him but admitted him to a nursing home/rehab center due to dementia. We immediately flew here to Florida and got him in-home health care. As my sister is in law school in DC I had to quit my job and move back here (I was living in California) to help him. I took him to a neurologist and he was diagnosed with LBD. He is very confused very often and has bad tremors as well as a stooped, shuffling walk. He falls about once a week, and refuses to use a cane. He has very disturbed sleep, talking and/or yelling and flailing while he sleeps almost every night. As far as we know he has not had any hallucinations yet.

His cognitive symptoms are mostly executive functioning stuff. He lacks motivation. He has a hard time comprehending what people are saying and we have to repeat simple sentences to him often. He struggles for simple words and his short term memory is a bit impaired but his long term memory seems fine (he had once instance where he asked me if I grew up in Ohio, when of course he knows I grew up in Florida with him. He quickly realized he made a mistake by asking me that.)

He is in denial also. He does not want to talk about his diagnosis. I call it "Lewy Body Disease" when I talk to him because the word "dementia" sets him off and he his very afraid of being "sent to the hooskow" as he calls it. He has good long term care insurance so my sister and I hope to keep him at home as long as he is alive and aware of his surroundings.

I am glad to have found this forum. I am excited to read about everyone else's stories. My first question is, what is the difference in expected timeline of the various stages depending on whether the person has LBD or Parkinson's with Lewy Bodies. In my father's case it is hard to tell. About 3-4 years ago we first started noticing mild tremors in his hands. This was also the time when he started forgetting words to the point where it was frustrating for him. Back then his primary care doctor told him there was nothing to worry about. As my sister and I did not live near him, we would only see him once a year or so. Each year he seemed a bit worse, but nothing that would really clue us in to serious dementia or parkinsons. Really the first time we saw symptoms that were obvious was this past December when we came back after he was hospitalized. His friends here say they noticed serious ones happening since last Summer. (Of course my father never called us or told us about it... it took being hospitalized before we found out).

So we aren't sure whether he has LBD or Parkinson's with Lewy Bodies, since the physical and cognitive symptoms seemed to creep up at the same time. And does it matter? Is there a significant difference between the two in terms of prognosis and development?

Thank you and should I post this question in another forum?

Emanuel


Tue Mar 22, 2011 9:00 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: My father is newly diagnosed
Others are far more informed than I am but I want to assure you that everything you wrote is VERY familiar. And what is typical about this disease is that NOTHING is predictable. What medicines work for one don't work for another. There are no 'time lines.' Some live many years; others die all too quickly.

You've come to the right place for learning about first person experience. I know that you will make friends and gain a lot of information. I did. Welcome, Emanuel.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Mar 22, 2011 9:10 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: My father is newly diagnosed
Good morning Emanuel, I'm glad you found this forum. I'd suggest you do a lot of reading here, as much as you can, as there is much info. here and you will find a lot of support as well.
I am not a medical person, but based on my experience and listening to and reading about otherws here, this is what I have gleaned. Re: your questions - LBD simply means the cognitive issues showed up first, with a PDD diagnosis the tremors and/or shuffling and other physical symptoms showed up first. For many of us, it's hard to really know "when it started" because retrospect has taught many of us that there were symptoms when we didn't realized there were symptoms.
For some of our LOs, there were symptoms many years ago, for others things weren't apparent till more recently.
As far as the progression of the disease goes, it seems totally random. For my dad, for instance, he was in his mid 80's when he started having some memory issues, falls every few months, some incontinence problems. In June, 2009 his PCP told me that he "has had dementia for probably 2 - 3 years, probably Parkinson's, but he has been able to hide it well from the family". He had an enormous decline 3 weeks later, and died about 18 mo. after that at age 89.
Others on here have LOs who have had obvious symptoms for many, many years and their LOs are still alive 10, 15 years later. It seems pretty random as far as longevity.
I wish you the best, and I know how hard CGing is from a distance. We were 500 mi. apart and I did a lot of traveling to take care of my dad his last few years. BTW, he went from home to hospital, to rehab for 3 wk. then to an ALF his last 17 months. Overall, the ALF ws a very good place and they took good care of him. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Mar 22, 2011 9:22 am
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Re: My father is newly diagnosed
Thanks you guys. I forgot to mention my father is only 73. That seems really young to me to have this. Is that true?

Emanuel


Tue Mar 22, 2011 9:39 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: My father is newly diagnosed
Unfortunately there are people on here whose LOs have symptoms decades younger - I believe there are some whose LOs are in their 40s. It would be interesting to see at what age most people's symptoms started. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Mar 22, 2011 9:48 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: My father is newly diagnosed
Sorry you have to be her, Emanuel, but so glad you found us. Welcome!

As I understand it, both Parkinson's Disease and LBD are caused by Lewy Bodies so the distinction between Parkinson's with Dementia and Lewy Body Disease [or Dementia] is blurry. Our first neurologist even claimed there was no significant difference in the disease pathology. There are apparently some who have just PD for many years and develop dementia late in the disease. This seems distinct from the rapid onset of symptoms most of us on this forum have seen in our LOs. The life expectancy in LBD is also shorter than in PD.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Mar 22, 2011 10:06 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: My father is newly diagnosed
Only 73..... As you see from my signature at the bottom, Emanuel, my husband is dying at 75. He was a sleep walker beginning at age 27. There were many symptoms ... all ignored until dizziness made him go to several neurologists looking for answers. We all have similar tales to tell.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Mar 22, 2011 11:50 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My father is newly diagnosed
Sorry you've had to join us here.

Perhaps you can offer the name of the diagnosing neurologist, if you like him/her.

There's a great dementia support group nearby. I'll have to dig for the contact info.

LBD = Parkinson's Disease Dementia and Dementia with Lewy Bodies. If your father's tremors started a year before the cognitive symptoms (which it sounds like they did), this would be Parkinson's Disease Dementia, also called Lewy Body Dementia. If they started at the same time, then this is Dementia with Lewy Bodies. (All Parkinson's Disease contains Lewy bodies. There's no distinction to be had.) Treatment for PDD and DLB are the same. PDD has a much longer survival time than DLB. 73 would not be young to have LBD.

I encourage you to consider making arrangements now to donate your father's brain upon his death. (No such thing as making these arrangements too early.) As you are in Florida, there is easily and cheapily done through the Florida Alzheimer's (and other dementias) Brain Bank. Email me privately if this is something you are interested in.


Tue Mar 22, 2011 12:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My father is newly diagnosed
Emanuel,

Here's a great dementia caregiver organization in your area (that offers support groups):
Dementia Caregiver Resources, Inc.
www.dcrinc.org
Karen (Karle) Truman, Ph.D. -- President
phone 727.391.9999

There used to be an LBD-specific support group in St. Pete. I don't know if it's still being held. You can check the support group list on lbda.org.

Robin


Tue Mar 22, 2011 1:11 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: My father is newly diagnosed
I have a question about tremors in relation to differentiating PDD. My mother had a slight tremor of her right hand for several years before her cognitive symptoms became obvious, leading to her diagnosis ("probably dementia with Lewy bodies," to be exact). She was extremely cagey about hiding the tremor (putting her hand in her lap at the table when not using it, etc.) and I don't know if her PCP ever took note of it. But it was never suggested that she had Parkinsons. Should the fact that this tremor existed early on be taken into account? I am taking her to a new geriatric neurologist in April, so I am wondering whether to bring this up or not. Or does it even matters at this point?

Julianne


Tue Mar 22, 2011 1:54 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: My father is newly diagnosed
My layperson opinion is that it doesn't matter whether your mother has PDD or DLB. But I think it would be interesting to bring up to the geriatric neurologist (never heard of this speciality!) to use it as an example of how well he/she can educate patients.

A tremor alone is insufficient to make a diagnosis of Parkinson's. There must be rigidity, bradykinesia, or balance problems as well.


Tue Mar 22, 2011 2:03 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: My father is newly diagnosed
This neurologist is one who was recommended by someone on the forum and when I looked him up, his specialty was listed as geriatric neurology in one place; elsewhere, it was stated that he is board certified in neurology and clinical neurophysiology. At any rate, I am interested in follow-up with someone besides the PCP, who clearly should not be expected to have the expertise to deal with this.

My mother was also falling frequently at the same time as she had the hand tremor, but I imagine it's pretty much water over the dam now. I'm just wondering about the original diagnosis of LBD made last year, but that's what the new neurologist might help clear up.

Julianne


Last edited by Julianne on Tue Mar 22, 2011 4:13 pm, edited 1 time in total.



Tue Mar 22, 2011 2:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: My father is newly diagnosed
robin wrote:


LBD = Parkinson's Disease Dementia and Dementia with Lewy Bodies. If your father's tremors started a year before the cognitive symptoms (which it sounds like they did), this would be Parkinson's Disease Dementia, also called Lewy Body Dementia. If they started at the same time, then this is Dementia with Lewy Bodies. (All Parkinson's Disease contains Lewy bodies. There's no distinction to be had.) Treatment for PDD and DLB are the same. PDD has a much longer survival time than DLB. 73 would not be young to have LBD.


The physician who wrote the book, Life in the Balance used the terms Lewy Body Disease, Lewy Body Dementia and Dementia with Lewy Bodies interchangeably and we have been told by neurologists that they are the same disease.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Mar 22, 2011 4:01 pm
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Joined: Mon Mar 14, 2011 12:23 am
Posts: 15
Post Re: My father is newly diagnosed
Hi Emanuel - So much of what you describe is familiar to me -the slight tremor that everyone said was nothing, the back and forth between LBD and PDD diagnoses. I personally don't think it matters, as it is the symptoms that are treated on an individual basis. You write very clearly of the beginning experience. It has been two years since we hired home health care for my Mom -just needing a couple of hours a day. Today she is completely dependent for all her care on her caregivers. I too wish there was another word -dementia seems a cruel word- and think you are wise in referring to it otherwise. At this point I tell Mom it is her "disease" when she asks why something is happening or why she can't do something she was able to do just a short time ago. I'm wondering if you might look into Dr. Brad Boeve's research on using Nuvigil with people who have the sleep disturbance your Dad has. There are many posts here that refer to his Continuum paper which I found very helpful, and can be found by going to the lbda.org home page and entering a search for Boeve continuum 2004 -it is the second entry that comes up, and you can click at the bottom of it to download the whole 33 or so pages. To me it is noble work to care for a parent-welcome.


Tue Mar 22, 2011 4:33 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My father is newly diagnosed
Emanuel,
Welcome to the LBDA forums, sorry for your need but I am sure you will feel comfortable here with many of the caregivers, I would be interested in the Physician also as I am from that area and my husband's neuro was in St. Pete. There is a support group in St Pete, One in Largo and one in Belleair so you have a few to check into if you like !

Again Welcome !

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Irene Selak


Tue Mar 22, 2011 5:08 pm
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